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In 2015, my husband and I had our first child who was born at 31 weeks but only 1 pound 13 ounces. We had no idea what was wrong until our exploratory surgery that said her intestines had died and only have 32 cm left. From there it went down hill and she passed away in the NICU. Our lives turned so dark so fast until we unexpectedly got pregnant with our second daughter Samantha. She is now 3 and is average height. We have no idea what our future held with other children. We got pregnant in November of 2018 with our sweet little Abigail. Because of our first, Meredith, we were always labeled as high risk. This is where her story begins.
 
At 21 weeks we went for our first high risk appointment. The tech was asking a lot of questions like “when is your due date? Have you had other ultrasounds? How many weeks were they measuring you?” I answered, august 17th 2019. Yes, at 12 weeks and I measured 11 weeks 6 days. But my stomach began to turn into knots. I couldn’t go through something like this again. She walked about and I turned to my husband and broke. I cried and screamed I could loose another child. The doctor came in (such a wonderful understanding woman) and said let’s not panic, let’s give her some time to catch up and we will re-examine in 3 weeks. 
 
3 weeks went by. We went into the doctors feeling like we are sitting on pins and needles waiting to see if she had improved. She was still 3 weeks behind. And we start to wonder what is happening. Another 3 weeks go by and she is still behind. Our doctor decided it would be best to re-examine with the genetic counselor. Lots of tears and reliving everything over again. We agree on an amniocentesis testing. We waited and everything came back normal. I was moved to more close monitoring to ensure we wouldn’t have any issues like the first. At 29 weeks I began the traveling from Houston to see another OB because when she is born we need the NICUs help when she is born. 
 
At 31 weeks I went to a doctors appointment in Houston who discovered my fluid had dropped and the blood flow was terrible. My fear was coming where I thought here we go again. They discovered I have Lupus. This also causes major growth restrictions within the pregnancy. It all made since at that point. I was put in self injections and that seemed to even everything out for her. However, they decided 36 weeks was too dangerous to go past, so we scheduled a C-Section day. 
 
36 weeks come and it is the day we have this sweet miracle. As I lay under operation I am counting the minutes and seconds till I hear her cry. At 1:55 pm Abigail Grace
 
wails and is taken to the side to be assessed. I am crying of tears of joy that she is okay. The nurses and doctors walked us through everything that happened, second by second of how she is doing. They allow me to hold her and kiss her and see her before she is taken to the NICU. The most people baby I have ever laid eyes on. So much fight, so much sass and so much sweetness. 
 
This recovery was the hardest it has ever been. And the emotions of going back into a NICU was so hard. After a week they said she was okay and would be transferred to the Woodlands NICU because she met the marks. The Texas Children’s NICU was absolutely amazing. The team was amazing and helped my emotionally, physically and help me understand her needs better. 
 
However, 6 weeks went by and we were all puzzled why she still wasn’t growing accordingly and very behind than a preemie. We decide it is best to do a whole exome test that allows us to see every part of her genes, DNA, chromosomes etc. At week 8, we discover she has MOPDII. We had no idea what that meant, what her future looked like, what we are to do for her. We were told to get her scheduled with the genetics team in Houston as soon as we left to get as much information as possible. When we went to the genetics team we were informed it was very rare. Only 100 known in the world. They did not have any information besides papers written from Angela Duker and Dr. Bober in Delaware. We were still struggling for everyday answers and had so many questions.
 
As of today, we have had a meeting with these experts and plan to visit them soon to better our child’s life. She has 2 dislocated hips and I am hopeful they can help her. The informed me that she is the first baby they have heard of that had hip dislocation so young. We still have questions but I believe now we are on the fight path. This has been incredibly hard at times for us as a family. It is hard to make sure our oldest child isn’t feeling left out because we are constantly going to doctors for Abigail. It is emotionally hard to understand why these things happen and trying to make sure her life is everything she deserves. 
 
With all that being said. I wouldn’t change her for the world. She has the best personality. The best attitude. She loves her doctors. She loves her sister, her momma, daddy, her grandparents more than life itself. Her laugh lights up a room. Her imprint on others is bigger than she will ever be. She has the best people rooting for her in her corner. 
 
This is the life of a primordial dwarf. This is the life of Abigail Grace. 

The Webb Family 2018

 

By: Megan Webb

My name is Megan and my husband is Ben. We have a twelve-year-old son named Myles and a one-year-old daughter named Myla who was born with achondroplasia. We were first told during my pregnancy at 24 weeks that it was a possibility Myla would be born with dwarfism due to her long bone measurements. We do not have any form of dwarfism in our family so in the beginning we felt shocked and overwhelmed. During our final ultrasound at 37 weeks we were told Myla had a fractured arm and it was now most likely that Myla would be born with Osteogenis Imperfecta. We were also told it could be one of two types of OI with one being 100% lethal. We did so much research and even more praying for our baby girl. Be accepted what God had planned for us and were ready to follow his path with which ever outcome he had chosen for us. On November 2016 our baby girl came into the world and she was perfect! The doctors were wrong and there were no fractures and she did not have OI. We spent a few days in the NICU due to Myla having a little bit of breathing troubles. After genetic testing it was confirmed Myla did in fact have achondroplasia. She is our little miracle and every day we thank God for her life and choosing us to be in hers. She touches everyone's heart she encounters. I literally have random strangers come and tell me how cute she is and/or automatically touch her adorable rolls every single day. She has such a big personality and loves getting the attention. We are so proud of her and it's remarkable how intelligent she already is. I feel blessed to be apart of this Little People family now as well as help raise awareness and build such amazing friendships. I can not wait to see what Myla's future holds. Her diagnosis does not define her and I know she will move mountains!

The Wilson Family 2017

 

Jessa Wilsons Story:

 

“She's so tiny and cute.” I've heard this phrase my whole life and now as I've become a mother here it comes around again, referring to my little girl. Now don’t get me wrong, I know its being said with love and kindness. but I'm getting ahead of myself. Let me start from my beginning. Both my parents were average height (if you consider 4'11 and 5 feet average but whatever) so when I came around and was tiny no one really thought anything of it. I certainly had no idea. One day a nurse at my elementary school pulled my mother aside and mentioned that a major local hospital in the “Cleveland” area was doing a study on short stature children and she really thought my mom should look into it. Well being the good mother she was, she decided that we should at least check it out. That was the first time I think my mother realized that I was dare I say it different….

 

We spent the day at the clinic. The doctors ran tests and tests and finally sat us in a room to explain their findings. Now I have to remind you that I was 6 I don’t really remember thinking or even really understanding what they were all talking about. I was a kid all kids are small I had no idea I was any different. But according to their tests I was diagnosed with growth hormone deficiency. Which turned out to be somewhat false but I'll get to that part later. I spent the next 25 years of my life not really understanding where I fit in. I knew I was shorter than most but I didn't look similar to what other people with dwarfism looked like and my research came from what I Googled from my computer. I had never met anyone like me. To help you understand better I am 4 ft. 3 inches but I never thought I had any features that typical achondroplasia dwarfs have. I am proportionate in my legs arms and torso just smaller. And again with having parents that weren’t 6 ft. tall everyone figured I was just short. So I continued thinking the same. The doctors answer to the growth hormone deficiency was to give me growth hormone shots. Which ended up not delivering the results they had hoped. I had taken them from 1st grade through 5th grade and any of my fellow parents out there know that trying to get a child to take a shot every night would be a complete nightmare. My mom got worn down fighting me every night to take it and we finally decided to stop. I do wonder sometimes if I had continued would I be taller but that is really neither here nor there.

 

For a long time I was uncomfortable with the idea that I might have dwarfism and I had this thought in my head that I was too short to be average but too tall to be little. Where did I fit in? I still to this day have a hard time describing myself that way.

In 2015 I was blessed to meet the man who I now call my husband. He has achondroplasia and has opened my heart and mind to a whole new way of thinking. In July of 2016 we found out we were expecting a baby girl. If it wasn’t for my husband pushing for me to get the genetics testing I had been putting off my entire life I would never have finally understood what makes me different. In simple terms I have a genetic mutation in my SHOXS gene and the piece that is missing is what produces a protein that makes your bones grow. Finally something makes sense to me, with out that piece that explains why I am proportionate just not tall. It’s a mutation that is commonly overlooked or undiagnosed.

So here I am about to become a mother for the first time when the doctors tell me your babies growth is behind a few weeks… that’s why my husband pushed me to get the genetics testing. We needed to know how our genes were going to effect our baby girl.

I've never really shared this with anyone and please don't judge me after I share it with you.

 

The day I found out my daughter had her father’s genetic disorder instead of mine, I was heartbroken. And on top of that I felt guilty for wishing she didn't have it. Isn’t that like betraying your own kind? Why couldn't she be like me or average height? All these thoughts were racing through my head. I was in denial about her having achondroplasia until the day I saw it in print when we had her genetics testing done. Would I change it if I could? yes in a heartbeat only because I've seen and heard about some of the medical issues that can happen and what parent wants to see their child go through that. Reality is I can't change it but with my own experiences, my family and the support from our LPOTW community I know my baby girl will grow up with all the resources and support she needs and she won't waist her time wondering where she fits in.

I feel truly blessed by the people I have met the last couple years. And If you ever feel like your not quite sure where you fit please contact anyone of our members. We are always here to help.

 

The Wilson Family Story 2017

The Davis Family 2017


Scott and I met, we became a blended family with his two children and my two. We decided to try and add another to our family so we could have our own child together. After a miscarriage, I became pregnant with Axel! We both wanted a boy so badly because I had picked out Axel's name and couldn't decide on a girl name, at his ultrasound they announced to us that he would be a boy! Scott jumped in the air clapping and yelling yes!! The pregnancy was typical for me, high risk due to Graves' disease. Not really much that was different from my other two, except constant contractions throughout. He was born a week early only because the doctor decided to do so due to my ultrasound showing a larger head size, so I was induced and he was born naturally on February 11, 2014, weighing in at 10lbs 8oz and 21 inches long! Which is normal for me to have large babies. All seemed normal at first until they gave him his bath and brought him into our room, his dad and I were in awe of him watching him sleep talking about how perfect he looked, as I turned to get my phone to call family and let them know they could visit, my husband says "umm he is turning blue!" So I came quickly back to the crib to see he was a purple-blue color and panicked calling in the nurse with the call button. Six nurses came running yelling code blue and took our new bundle of joy to the nursery. The next two days axel repeated these "spells" of not breathing and turning blue colors. One doctor said seizures another said maybe he was trying to pass the "plug" stool. Another doctor said possibly heart condition. All these ideas of why being thrown at us but never an answer. He was transferred to children's hospital and monitored for 2 weeks, no one could give us an answer to why this was happening to our son. He stopped the "episodes" as they called it.

 

So we were able to take him home, terrified of whatever this was may happen again. Never did happen again but we went two years of constant ear infections, no sleep, MRI's and ultrasounds to check for fluid on his brain and unanswered questions before we finally received an answer. I noticed one day while taking his pictures that his arms seemed short for his body, not knowing why I ignored it. Then one day I questioned his pediatrician again about his bowed legs because I had asked before and no one would tell me anything.. and Axel was rolling his ankles and falling a lot, experiencing pain from it. So I spent a month trying to get someone to give me a definite answer or even to see him, Children's in Columbus was no help at all. So I searched online and found the achondroplasia page and polp page and they suggested I contact Akron children's and so I did and 3 months after Axel turned 2 we finally had someone do correct testing and tell us he has hypochondroplasia. First came confusion, how's and whys. Then fear.

 

We worry about him some days, we try not to think too much into it because we don't know how others will treat him in school or in the adult world. As a parent tho I think everyone worries about their child average height or not. We just see the way he is, outgoing, friendly, determined, unstoppable. If he wants something he figures out a way to get it or do it, he is so intelligent and his smile is to die for! Those dimples and a big grin, he is always the center of positive attention where ever we go with that smile of his and his gleaming red hair and sparkling blue eyes. We all still love him the very same as we did before we knew he was an LP. Our older four children adore him and guard him, often saying things about how they will react if someone ever made fun of him, but none of us really know how to react so we just let them react in a way that suits them. So far tho we have only had one incident. We are learning as we go but if you could meet Axel you would see what we see, this boy is going to do great things!

 

The Reva Davis 2017

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